If you’re still on my old autism blog, Embracing Chaos, I invite you to hop on over here. You should find all the old posts and comments you’ve enjoy or made in the past. You’ll also find all my future posts as they are uploaded in the, um, well, future. But you won’t find those posts here. I’ll leave this post up for a while, but I won’t be updating this blog. After enough people have had time to make the leap over to the new site, I’ll be shutting the old site down forever—assuming I can figure out how.

As you’ll see, the new site has a lot to offer. So, please, check out the new site and take a look at the brand new content I’ve provided. You may even want to check out my old writing blog (which has also moved) or my new marketing blog, which was just created.

Will and I had a meeting with his guidance counselor last week. We talked about what Will wants for his future, what we were doing about it, and what else we could do about it. As you may recall, Will wants to be a video game designer. So, I told the counselor that, as far as electives were concerned, we were focusing on art and computer classes.

She gave us some great news! Next year, Will can take graphic design and game design (a new class!) for the full year! I found that very exciting and Will was psyched, too. But, while we were still talking along this vein, Will dropped a bomb on me.

“I also need to learn to speak Japanese, because I’ll need to speak Japanese when I work for Nintendo Tokyo.”

I sat in stunned silence. We’ve talked before about how Nintendo is a Japanese company. We’ve talked about how, to work for Nintendo, he’d have to learn Japanese and he’d have to move across the world. Never once did he say, “I want to do that!”

Now, it’s not that I don’t want to encourage my son to pursue his dreams. I do that every chance I get! Nor is it that I think, just because I’m his mother, that I have a right to dictate what those dreams should and should not be. I honestly don’t.

But, honestly, I am a mom!!! You don’t suddenly drop this kind of bomb on me when I’m in a meeting with someone we’ve just met. Give me time to process the idea! I mean, it’s Japan!!!

Now, to be fair, there’s absolutely nothing wrong with Japan…except that it’s almost the exact opposite of us on a globe. A small thing, really, until it’s to scale. Of all the reasons I can think of why this is a bad idea, mostly it comes down to this: It’s too far away for me!!!

I am getting used to the idea. I’ve done a good job resisting the temptation to talk him out of it. I haven’t even brought it up (to him), because I know I would try to talk him out of it. But it’s a struggle. New York City? Fine. L.A.? Fine. But Tokyo? I’m not ready for that!

For years, Alex didn’t really understand how communication worked. Any communication that occurred was accidental. He would do or say something we could understand and interpret, and then he’d be rewarded with what he wanted or needed. But he had no apparent control over these bursts of communication.

After years of speech therapy, special education services, and intensive in-home behavioral therapy, Alex started to get the idea behind communication. Using pictures and PECS, voice output devices, hand over hand, and the occasional gesture, Alex started to communicate in a very basic fashion. Over time, he learned to show more specific wants and needs, like pulling out a food or drink he couldn’t open and setting it in front of someone who could open it. He would spell out key words using blocks or tiles with letters on them. He would even type in a few key words on a computer.

During these many years of slow progress, actual spoken words were rare. They occurred in those serendipitous moments when his frustration exceeded his tolerance without overwhelming his sensory processing abilities. During these rare moments, a word or a phrase would pop out of his mouth and we would understand. These brief successes were always a surprise—a blessing, but still not a product of controlled communication.

Now, finally, after years of trying, I have succeeded in providing Alex with a communication device. From my own perspective, this is “assisted communication,” in that Alex requires technology to access his ability to communicate. However, this is not “assisted communication” in the sense that we’re putting words in Alex’s mouth.

In an effort to teach Alex to use the device more thoroughly, we will find the words (and show him where they are) in order to say what we think he might want. Then, if it is indeed what Alex wants, he will tap the sentence and the device will say it. If it is not what Alex wants, he’ll erase it and enter in what he does want.

Alex is communicating! He communicates familiar expressions independently with his device. He communicates less familiar expressions with some adult assistance and support. He communicates and the device speaks for him!

But the wonder doesn’t stop there. Hearing the device speak what he wants or needs has helped Alex get communication so much more thoroughly than he has ever understood communication before. Not only is he using his device as a talker, he’s talking! He’ll listen to what the device says, and then he’ll say the keywords, too! He’s said more words in the last week that he’s said in the previous year!

With all the success Alex has been having with this device, we’re ready to proceed to the next step. We’re in the process of gathering as much data as possible, which the speech therapist at the clinic will use to begin the application process for a permanent device. She also said that it’s likely, since Alex is doing so well, that we will be able to borrow a device from the clinic, so that Alex can continue to access communication should the trial run out before the permanent device arrives.

Finally, finally, finally, Alex gets it!!! And we’re going to do everything in our power to make sure he can keep it!

For some reason, I keep running into these same words, “I didn’t have a choice.” It’s cropped up so many times lately that I just have to comment. My point is simple: There’s always a choice!

Admittedly, we may have few choices, we may have bad choices, but nonetheless we always have a choice. Claiming anything else serves only two purposes: justification and disempowerment.

It started with a line in a book. “Remember this, you don’t have a choice.”

Except, even as that was said, the explanation belied the statement: Basically, the choice was to go along with the powerful but good person or fall into the hands of the powerful bad person. To avoid the latter, the powerful good person was willing to destroy the characters she was trying to save.

We are talking about a life-or-death choice, but it is nonetheless a choice. And, honestly, there are some things we, as human beings, need to be willing to die for. Today is a good day to take a moment and think about that.

Today is the day we honor Martin Luther King, Jr., one of the great American heroes. He became a hero, not be disavowing his choices, but by claiming his right to choose. And Martin Luther King, Jr. did choose and he chose well.

These were not easy choices. They were inevitably life-and-death choices and Martin Luther King, Jr. chose what he did, knowing the example he was setting and the risks he was taking. He could have much more easily have said, “I have no choice.” He could have sat down, shut up, and lived long. If he had, he wouldn’t be a hero, because he wouldn’t have made a difference. He would have lived longer, but he would not have lived better.

Every time we say, “I have no choice,” we give our power to choose away to another. When we abdicate our responsibility to choose, we give up our ability to make a difference. Today, of all days, honor your right and your responsibility to choose. Don’t take the easy way. Do something that will make a difference.

It is the opinion of this writer that any time you make a generalization, you enter dangerous territory. Among other things, you risk making the totality of your point (which might be valid if it were better defined) null and void by a single, contradictory example.

[Enter James I. Charlton’s Nothing About Us Without Us from stage left]

In what must be considered poignantly illustrative of their perilous and degraded status, people with disabilities are significantly controlled by charity and social service institutions (broadly considered, private welfare agencies, asylums, and residential facilities). This is the case throughout the world, although charities are more prevalent in the United States and Europe.

…

Some might see that it is contradictory to point out that most people with disabilities do not have access to a safety net while at the same time criticizing charities and social service agencies. (p.93)

Charlton’s premise consists of a few main points:

While charities and social service agencies (lumped together, falsely) do help some, they also create dependency.

They contribute to the degradation and isolation of those they help, but taking care of clients whilst keeping them out of sight.

If the problems they ameliorate were solved, the charities would cease to exist.

Many of the people who do this work do so because, in the words of Billy Golfus, “Their game is about wanting to be in control of other peoples’ lives,” (p. 94).

First, charities are nonprofit organizations that gather donations from the public (through public and private grants, as well) in order to meet an organizational mission. These charities may hire social workers, but a social service agency is, almost by definition, a government organization, which also hires social workers. Lumping these very different kinds of organizations together as a single problem or as a collective is logically unsound, because they operate and function in very different ways for very different purposes.

Second, the unfortunate reality is that people who cannot support themselves are dependents. While much is done that encourages continued dependence, this is true across the entire strata of society, from families to international governments. If that is to change, then services need to be made available that contribute to independence. It’s a difference of paradigm and mission, not organizational or functional structure. A nonprofit that takes creating independence, or better yet interdependence, as its mission would still be classified as a charity or a social service agency, depending on whether it’s independent or governmental in nature.

Third, organizations with such a mission already exist, as a byproduct of the same attitudes and social changes that have made the DRM movement possible. There are organizations that have already made the transition from disempowering caretaker organizations to empowering education organizations.

Fourth, any organization that fails to adapt when its environment changes, dies. Those that try to keep the environment from changing inevitably fail and die. Only those that change survive. This is no less true of charities than of any other organization.

Fifth, there certainly are people who strive to exert control over others’ lives. Some gravitate towards social work. Some start charities. Some start businesses. Some start wars. Most just have kids. We live in a broken world full of such people and the rest of us just have to live with that, or change it.

Despite the fact that I can pull apart the argument on logical grounds, there is truth to what Charlton is saying, especially from the perspective of people who’ve been disempowered for most of their lives. If people are ill-prepared to take control of their own lives, then there are those who will try to withhold control from them. Again, most of these people are called parents. There’s a time for this, and there’s a time to let go. And it’s never easy knowing which time any given moment falls under. There is nothing inherently malevolent or oppressive about this, though there are certainly malevolent and oppressive people who engage in the behavior.

For me, the heart of the matter is something that Charlton would seemingly refute or ignore. Charity is, loosely translated, most properly equivalent to “brotherly love.” The word as it is used today is a deviation of the charity found in the King James Bible in 1 Corinthians 13, which states in verse 3, “And though I bestow all my goods to feed the poor, and though I give my body to be burned, and have not charity, it profiteth me nothing.” The whole of this chapter gives ample evidence that 1) giving and 2) serving are not charity, that charity is loving others in Christ-like fashion, and that these acts only do good when they are done in the spirit of true charity. As Charlton seems quite anti-religion, he might find it rather ironic that his observations are proof of the soundness of this part of Jesus Christ’s doctrine, at the very least.

Shortly after reading and getting wound up over this segment, I had a chat with a social worker who also happens to have learning and neurological disabilities. This person had been struggling for months at work, because of miscommunication resulting in part from her reluctance to disclose her own disability and in part from her co-workers’ apparent distinction between things-that-apply-to-clients and things-that-apply-to-coworkers. This isn’t the first time this issue has gotten in the way of her work, either.

Part of it is that Charlton’s not wrong in his observations, he’s just wrong to generalize those observations and apply them to two entire sectors in the global economy. Unfortunately, he’s right that most of the professionals operating in these sectors have been taught in ways that contribute to the very problems he’s cited. These are people who often don’t know better, in that they’ve never been clients. The people who have been clients tend to be marginalized, in part because they’re not taught how to counteract the forces that marginalize them. These issues are not particular to disabilities, but are holistic and systemic within both sectors.

My friend has been a client in almost every applicable way. She has had disabilities, presumably for her entire life, but has gone undiagnosed or underdiagnosed for most of her life. She grew up in extreme poverty and in an environment rife with abuse and neglect. She has been failed time and again by the systems that supposedly operate to protect and support people like her. She entered her profession to do better for others than was done for her. And she’s not alone. There are many, many like her all over the world, who have struggled against terrible odds, who have become professionals in either the nonprofit or public sector, and have chosen to do better for others. And Charlton’s rash generalization erases them all.

First, I have some very talented people helping me to create a professional website in my long-ago acquired online turf, www.StephanieAllenCrist.com. This transition will be very important to my changing business, but it will also impact my readers.

I’m still not sure how it’s all going to work, but essentially this blog is going to be ported to www.StephanieAllenCrist.com, merged with my other blog and with a new one, and organized by category: Writer, Advocate (that’s this one), and Marketer. Some of the old material will be dropped from the site (but not actual posts) and some new material will be available (more will be added as I’m able). In the end, it should be a wonderful website that has a lot more to offer, and is also easier for me to maintain.

This news leads directly into the next bit. I’m finally able to publishing Discovering Autism / Discovering Neurodiversity!!! Unless something changes dramatically in the next month, the e-book version will be available on Amazon and other retailers for immediate download, while the print version will be sold exclusively through, you guessed, www.StephanieAllenCrist.com.

After my memoir is published, I will also be publishing some shorter works. The details will be forthcoming when everything is a little closer to being ready to go. Meanwhile, I’m plugging away on the manifesto, which will be the next full-length book to follow the memoir.

It’s been a long road to get to this point and we’re still not all the way through this journey. Now that he has the trial device, we all have to learn how to use it effectively, including programming it and maintaining it. That’s step one.

Step two is learning how to record the data required to prove that this device is effective for Alex, thereby securing the funding for the permanent device. This begins on Wednesday.

Step three is actually gathering the data we need within the timeframe of the trial. I don’t think proving that this device works for Alex will be a problem in and of itself. He’s already successfully communicated several things using the device, both with assistance and independently. He’s communicated “go to grandma’s house,” first with assistance and then independently. He’s requested mac n’ cheese, quite adamantly. He’s also typed in a story for the device to tell him; rehashing an old Veggie Tales story. He also tried to get the device to sing the Veggie Tales theme song, but the device couldn’t properly interpret the “Veggie Taaaaaaaaaaaaaaaaaaaaaaaales” at the end. When I saw him do that, I couldn’t help but laugh and warn him, “That’s not going to work,” but he tried anyway and the device did try, but it did not succeed.

The tablet itself is Samsung technology, bound by a bright blue bumper. It’s got a strap attached, as well as a handle, though so far Alex doesn’t like the strap. The program within the tablet is called NovaChat 10. So far, the company has been very email-on, customer service oriented. Luckily, the speech therapist has been very good at responding to these e-mails, because I haven’t been.

We still have several months of weekly trips up to Madison ahead of us as we learn to use this device and as we secure the procurement of a permanent device. Wish us luck!

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.

(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

Across the U.S., we’re being inundated with immoderate views. Recently, three men died instead of being taken into police custody. The issues are poignant: racism, police relations, recognition of authority, delegation of authority, and acceptability of subculture, to name a few. None of these issues usually appear on this blog.

I don’t write about racism or racial subcultures. But these events concern everyone, because the results of these events have included riots, public demonstrations, the assassination of police officers, and, of course, a whole lot of public commentary. Much of the latter involves individuals or organizations trying to use these “current events” to bolster their own positions by taking an immoderate stand for or against something pertaining to these tragedies.

I’ll take a stand, too. I believe people shouldn’t die because of their skin color. I believe police have a responsibility to protect themselves and others while on the job, because that is their job. I believe neither stand is the antithesis of the other.

There’s nothing extreme about my position; nonetheless, it’s controversial. One might assume that I believe the three men that died instead of being taken into police custody died because of their race. I don’t. In regards to the first two events, people came to these conclusions before the facts were made publicly available. They did so for two reasons: first, the media incited the public to believe that race was a factor in these events; and, second, people believed the claims purported in the media because they were inclined to believe them. Now that more facts have been made publicly available, the facts don’t seem to support the conclusions so many people reached directly after the incidents; yet, it’s easier for them to continue to believe in some great conspiratorial cover-up than to admit they were wrong. The truly sad and unfortunate part of this is that this country, this supposedly “free nation,” has a history of cover-ups just like the ones they suspect, so their positions aren’t implausible or even irrational. (In regards to the third incident, when you pull a gun on a police officer, you can expect to get shot—that’s what they’re trained to do!)

One might also assume that I think how the police handled these events was above reproach. I don’t. There is always room for reproach. But there is a difference between reproach and threatening their lives. There is a difference between reproach and rioting. There is most definitely a difference between reproach and assassinating random police officers. There is also a difference between reproach for its own sake and effective protests.

One person was sharing with me their take on the “die in” at the Mall of America. Yes, these people trespassed. Yes, they demonstrated on private property. Yes, it was disruptive. It was supposed to be disruptive. It was supposed to get attention. It was supposed to make the news! That’s what peaceful protest is all about!!! From everything I’ve read and everything I’ve heard, nobody got hurt, nobody was violent. They got their message across in a way we should be able to support.

Liberals, particularly extreme liberals, want to turn this—and have achieved some success in this regard—into a race war. Conservatives, particularly extreme conservatives, want to turn this—and have achieved some success in this regard—into a culture war. In the midst of these extremes, moderates (regardless of the way they lean) are most often silent; but, it’s not because they’re not talking, it because they’re drowned about by the loudness of the extremes.

We could all spend a lot of time pointing fingers and accomplishing nothing. For the most part, that’s what people have been doing. A riot will destroy lives and businesses, but it will go down in history and change nothing. Distorting the views of opponents, as many conservatives seem inclined to do, will create talk, sway the unwary, but will inevitably change nothing. We create change when we sit down, figure out what went wrong, and fix it.

That’s what moderates do. They try to find middle ground. They try to create solutions. They work with people who are different from them. They try to implement solutions. At least, that’s what they do when they have a chance to try.

This society that revolves so much around hits and likes and viewership doesn’t condone “moderacy.” In fact, “moderacy” isn’t even a recognized word. But immoderacy is. And that’s what we get, because that’s what bolsters ratings.

We don’t need ratings. We don’t need pundits. We don’t need riots. What we need are solutions.

Once upon a time, the boys had one Kindle. Then, they got two. Then, one broke and so we bought a Nabi, instead. Then, I got the one fixed on warranty, so I had a Kindle, too. Then, Ben lost the Nabi (we always assumed it was deliberate, because the Kindle was preferred because it has fewer restrictions). Whether it was deliberate or not, it was definitely too irresponsible for a $300 “toy,” so Mark put the Kindle up and the boys couldn’t have it back until the Nabi was found.

Months passed. Maybe a year. Maybe more.

Then, Ben’s room got a very thorough cleaning and the Nabi was found tucked under his carpet. Don’t ask how, because we don’t know.

Mark washed both devices, charged their batteries, and gave them to the boys. Now, they are happily using their devices, unless one is still charged when the other runs out of juice, and then they are “happily” fighting over the device that still works.